Hi Everyone!

Some of may remember me as i was a regular here a year or so ago, but i'll be a stranger to the rest of you, so first, a catch up on me:

I've had rsd in my right arm for almost 11 years and in my right leg for 5 years. I'm a mum of four kids but i lost my 9 year old daughter in a car accident last year. for the past year and a half, my rsd has been fairly well managed with ms contin, baclofen and endep, with 4hourly morphine liquid for flare ups. i've also had 5 ketamine infusions, with the last being in 2008 when i had a hysterectomy.

but everything changed last week when i sprained my right wrist. my rsd has gone to levels i've never had. its at a constant high with big pain attacks happening 2-4 times a day, that last for at least an hour, if not 2. they feel like the worst labour contraction pain, but with no ebbs or breaks at all. i squirm and yell and cry all the way thru.

my hand has completely turned in and is swollen to breaking point, like my skin is gonna rip in the middle, and i can't feel my fingers or thumb. my wrist has totally contracted and i have to walk with my arm out to my side with my hand higher than my elbow- almost "i'm a little teapot" style! i can't do anything for myself and my day revolves around pain attacks and medication times.

i went into hospital on friday cos i couldnt cope with it anymore, but all they could do was give me morphine every 4 hours, like i was doing at home. the pain team weren't going to be there until monday so i left on saturday nite to come home, as there was no point staying there. i did however get the dr to talk to my rsd specialist (who is also the director of pain management at that hospital), who said i can come see him on friday. he also got me started on gabapentin (aka neurontin), which i've been on in 2004 and 2007, with moderate but short-lived success.

because my rsd has been managed pretty well by my tablets since late 2009, before we lost our daughter livvy, i'm way out of the loop when it comes to knowing what new treatment options are out there for us. whether its a medication, an infusion, an IV medication or an implant etc, i'd like to know a bit about what the flavour of the week is, so that i can ask questions if my pain doc suggests anything.

also, to those of you that have had your wrist/hand contract like this, what has helped open it back up again?

my hubby has just started working full time, after being my carer for the past 8 years, and i'd hate for him to have to give that up as soon as he started. but i'm totally dependant on others right now (my mum has come up from melbourne for 2 weeks to be my carer) and my pain is the worst its ever been. we're also moving house this weekend, which is a hugely emotional event (because of losing our daughter last year) as well as a very physical one. my kids have gone thru enough already without this making life even harder for them. so i really hope we can turn things around asap.

sorry i've rambled on so much, i have a tendancy to do that!

basically, any suggestions you can give me on new pain relief options or what could help open up my wrist again, would be great. i'd like to know whats out there now that could be worth looking at.
xxxxxxx

Welcome Back! I was thinking about you the other day. Sad its under these conditions...

How did the ketamine infusions help you? Maybe that is something to look into again, because I know thats relief for alot of people. Last year I had my hand slammed in the door at the hospital and ketamine calmed the rsd down alot. That is what helps me the MOST when something like that happens... ALSO when you get hurt, get a nerve block helps. It is temporary but helps the NEW rsd, it doesnt help the old rsd that we have had for years but it helps the new rsd for sure.

Also, on the side just being sprained. get Arnica Montana they sell it in disolvable tablets and a gel and put it on your wrist where you sprained it and it will speed up the healing. You can find it at a health food store... not sure the names of the stores in Australia. Also, soak it in warm water with Epsom salts to help with the inflammation and help heal the sprain faster..

Also, getting on neurontin for a few weeks is ALWAYS a great idea for injuries to calm everything down.

So sorry your rsd flared up so badly with this.... I hope somebody on here can give you some new information. I am going through a possibility of having lupus along with rsd, so I am just trying to live as well, and my rsd is through the roof. Hang in there Kate. I hope this finds you some relief.

Hannah

I am so sorry you are facing this once again. I do remember you and I am sorry again for all you face. Did the ketamine infusions help in the past? If so could you look into that again? Are you currently on all those meds you stated? It is good you are seeing the pain doctor on Friday. I hope you get some direction then

Hello old friend -

So very sorry to hear about this. Just tried to put up a long post but am at a cheap internet cafe on the road which logged me out as I wrote so am trying again. But must be brief.

Although it's usually used when there is "spead" to a new extremity, the difference between wat's going on in your right arm vs. wrist/hand sounds dramatic enough to that a fresh round of blocks combined with (my strong recommendation) inpatient continuous regional anesthsia - possibly with ketamine - might knock out the new stuff right away, but only if done ASAP. Basically, there's strong evidence that a whole new inflammatory reaction has kicked in, as opposed to more of the same old, same old CNS generated chronic CRPS. I know the inpatient option doesn't sound attractive in terms of taking care of the kids, etc., but I would beg you to discuss this with essentially every pain doc who has ever treated you and whom you respect.

In the meantime, one thing that's new is "potentiating" opioids with either Dextrapromorphone HBr (DM) or "low dose Naltrexone." While these are options that can be discussed with your doctors, and I agree with Hannah that some Neurontin can never hurt - put you to sleep maybe - DM has one amazing property: it is the most widely used active ingrediant in non-prescrption cough remedies, and at least in the U.S. there are a couple in which it is the ONLY active ingrediant. And the best part is, 120 mg./day is not only the maximim recommended dose in adults for coughs, but has been shown to be clinically effective in potentiating opioids! I would however start at a lower dose for the first day or so, just to make sure it doesn't work too well, as it could in rare circumstances with the right genetics. In any event, if Matt could pick something up where DM is the only active ingrediant, I would strongly suggest going for it. Then if it works, and it does for me in a new prescription format, you can mention at some point to your doc that "last week" you had a bad cold with a nasty cough, took something that you later realized was just DM and by the way can s/he prescribe it for you, where it really seemed to make the opioids more effective?

But having said this, recognize that whatever combination of meds relieves your pain won't take the RSD out of your hand and wrist, whereas, blocks and/or a continuous regional infusion - of given soon enough - just might. (Once more, my vote is on the infusion.)

Good luck! And know that more people than you can imagine carry you and yours in their hearts and thoughts. But what else is new?

Mike

Welcome back cake....

You have had to endure so much in the last year..You have our support and heartfelt well wishes...I remember the tragic accident with your beautiful daughter...

I have not been successful with medications for my RSD... My first thought, as with others here is how about trying Ketamine again, quickly for your newest RSD event.?? Would that be possible?

In the mean time, Its so nice to hear from you after this past year....

Hugz for you.,

Kathy

Hi Cake,

I am so sorry about your daughter.

All of the above suggestions are wonderful. Maybe after a block, if that is what you decide to do, some light PT and some splinting to allow the arm to stop contracting. I had somewhat of the some problem for different reasons and it is very uncomfortable and not being able to care for yourself can really make you crazy so I can totally relate. I remember it being a hard balance to splint but not to much. But after many months of PT and splinting it did work. It's not perfect but I would say 90%.

I hope your doctors can find you some relieve in the very near future.

Great to have you back.

Gabbycakes

I second Mike's suggestions...and I wish you the very best. I hope your docs can help you as soon as possible.

xoxox Sandy

I am so sorry for your very difficult experiences. I am new to the CRPS thing and haven't had any treatment other than physio yet. I'm sorry I can't offer any advice that way but I can add you to my prayers and pray for strength and peace to come your way. Take care! Grace and Peace

I have recently had surgery that spread my RSD from my just my left shoulder, now it goes all the way to my hand down my back, and left leg. These new areas where the RSD has spread are so very painful that I have not been out of bed much in the past few months. I'm waiting on my ketamine outpatient. I just saw my pain doc last week though on how to get this crazy pain under control, and two keep it from progressing further while we wait for my appointment in September.
I was lucky (ha!) that my RSD was diagnosed correctly fairly quickly, less than six months after the original injury. So we were able to get series of blocks and things done very early on. None of them were effective for me. My pain doc does not see any reason for me in particular to get more blocks since they had never proven effective. If however they had been, she would have done a series of blocks on my arm and back immidiatly. So if you have had any previous success with blocks I would suggest trying that route first.
She also talked about being able to take a low dose of oral ketamine at home to help get the flare up under control. We decided on a compound cream that will contain ketamine and Norotin. It still hasn't arrived, but I am excited to see if it works.
Right now I also use a gel called Volataren. It is an anti-inflammatory gel, and also forcing myself to rub the upset areas keeps them from getting too hyper sensitive.
Also, when my flare up first started in my arm I would get intense muscle spasms that would force my hand closed. My doc's massaged my forearm as much as possible and then put me in a hard wrist brace for six weeks, just to give the nerves a break. May help?
Wish you the best.

I am new to the forum and really just getting my bearings on RSD treatments so I don't have anything to offer beyond what has already been suggested. But I wanted you to know you and your family are in my thoughts and prayers as you all have been through extremely difficult times.